10 Things Autism Parents Want You To Know

 

 

1. The use of the 'R word' and High Functioning/Low Functioning.
This should go without saying. The use of the 'R word' is both outdated and offensive. Too commonly it's used as a term to demean another person. My least favorite question to be asked is, "Is she low functioning or high functioning?". Guys, it's never okay to label a person by how 'able' someone is. The spectrum is so vastly diverse, either way you look at it saying this is diminishing to a person's struggles or under estimating a person's abilities. 

2. We celebrate the small victories.
Hearing your child's first words, watching your child try a new food, and potty training, are all to be expected from your average neuro-typical child. These are things most parents don't think twice about. When you have a child on the spectrum, you might have to fight for years for a few words- if any. Some of us will never hear our child say, "I love you." or "Good night." It's hard. People one the spectrum deal with sensory sensitives of all kinds. Something as simple as trying a new food can be extremely overwhelming and feel damn near impossible. Things like learning to use a straw or zipping up jacket may seem like a small feat, but in reality these “small victories” are the things we as parents live for. 

3. Non-verbal does NOT mean stupid. 
The inability to speak is not a direct reflection of someone's intellect. People are quick to assume that a nonspeaking person is 'low functioning'. 25%-30% of people on the spectrum are non-verbal. There are so many ways someone who is non verbal can communicate and express themselves. Things like body language, eye contact, tone, stimming, and facial expression are all ways someone can use to express how they're feeling. Sign language is popular for children and adults, writing, typing, apps on electronic devices, and social stories are great forms of communication. If all else fails- try a smile, the universal way to show kindness. People often wonder if someone doesn't say 'I love you', then how do you receive it? Hugs are great, but can be limited. What it comes down to is affection is shown in many forms. My daughter's favorite way to show affection is through pressing up against me. Or anyone she likes in fact. She does this with her feet, her body, her head, pretty much anyway she can find a way. So if my child is sitting dangerously close to you and begins to push. She's not being aggressive she likes you. 

4. I am an unapologetic helicopter mom. 
Please don't tell me to, "Relax! and to come sit down. Your child will be fine." I'm sorry my child has a tendency to wander, has zero fear of falling, and doesn’t understand the imminent danger of a moving vehicle. While everything may appear seemingly under control, I know at any minute that can change. This means I have to be on high alert at all times.

5. What do we want? Sleep!
Being a parent is hard work. Being a special needs parent requires more. Most parents are excited for the day when their LO starts to sleep through the night. For some this day seems like it'll never come. Problems sleeping are normal for those on the spectrum. Unfortunately, so is wandering. As a parent you always have to keep one eye open and at times getting up through out the night, and keep doors locked. While not every person has these concerns its better safe than sorry.

6. Autism does not have a look.
Telling me my child doesn’t look autistic is NOT a compliment. I will say this, I understand that when someone says this, they think they are actually complimenting you. They think they’ve found a nice way to say that your child doesn't look like they ‘disabled’ . Autism does not have a ‘look’. It’s a neurological disorder. Please don't undermined a person's Autism by claiming they seem 'normal' the ten minutes you've been around them. This diminishes a person's struggle. And it’s just plain rude.

7. Stop staring a silently judging. It's more obvious you're doing it than you think. 
Stop and think before you start to pass judgment on the child sitting on the floor of the grocery store, having what appears to be a temper tantrum. Or you're out to eat with your family and spot a child being disruptive and rocking back and forth. How likely is it that you're actually seeing a child have a meltdown (NOT to be confused with a tantrum.)? Or that your baring witness to a child having a sensory overload? The answer is- Very likely. This is hurtful for the parent and especially the child. It’s hard enough trying to gently guide our child back to a level of comfort and to have people silently casting judgment on you and your child. My child is not bad, or defiant. They’re simply having a hard time. Every day we must be the buffer for our children, in hopes of avoiding meltdowns and overwhelming situations. Everyday we are doing the best we can just as you are. Instead offer a helping a hand, or even just a smile. Please keep all head shakes and peircing stares to yourself, thank you!

8. Children With Autism become adults with Autism.
There is no cure for Autism, but early intervention and various therapies can provide astounding success. These services are vital for our children as well as adults within the Autism community. At 21 a person 'ages out' of these state programs. What's next? Most people on the spectrum do not live independently. Where do these people go? Without programs these skills they've spent years acquiring can begin to fade. Regression is real. The worst part is what happens to my child when I no longer can care for them? Who will care for my child when I’m gone? Some will end up in residential programs that promise to cater to their individual needs. While some end up in a facility. So why is awareness and acceptance important? Autism is a life long disorder. My child will one day be an adult, and I one day will not be here to be her buffer from all things chaotic. These are the concerns we as special needs families must face. I hope everyday that one day the world will be more accepting and understanding place. 

9. There is no set age for toilet training. 
Often times we may find ourselves catching someone noticing our child is not potty trained, and that’s followed by some unsolicited advice on how they are old enough to use the bathroom on their own. This is really frustrating. I can't tell you how many times someone suggested this or that, when they fully didn't understand the situation for what it was. Whether it’s a fear, a sensory reason, painful, or they geuniely need assistance, whatever the reason may be, telling someone their child is too old to not be potty trained is rude.

10. Acceptance over awareness.
Awareness is great and all, but simply knowing someone exists isn’t enough. Not to mention ‘awareness’ has created many misconceptions about autism and the people affected by it. For one, society has created this small neat little box that has this perception of a ‘one size fits all’ concept of autism. When in reality the many of those fall short of the expectations. People see autism as two major extremes. Either they assume you have some amazing ability and are a genius, or you’re non verbal and extremely disabled. This is hurtful because the majority of those on the spectrum fall in the middle of these two extremes. Some talk, some don’t. Some have major sensory issues, while others not so much. Some autistics have other co existing conditions like epilepsy, and GI issues, while others don’t. Some are intellectually disabled, while others aren’t. There is a reason it’s called a spectrum. No two people on the spectrum are a like, and to make the assumption that they are is hurtful for the individual as well as the autism community as a whole.

 
 

The Spectrum

 

Autism is a spectrum, true to the word in every aspect.


The most common misconception I've experienced with having a child with Autism is that for the most part people think Autism is simple-black and white. People tend to think that a person is either nonverbal, unaware, and feel bad for you. Or on the flipside your child has savant syndrome (some sort of amazing skill or ability), is verbal, and struggles minimally. Neither of these misconceptions really do justice in explaining Autism. For one, savant syndrome is rare. And secondly, under-minding a person's abilities or struggles because they appear 'normal' is wrong. Thinking someone is unintelligent because they're non-verbal, couldn't be more further from the truth. People tend to think of the spectrum as two extremes and forget the in between. The in-between is where a majority of people on the spectrum fall.

People fail to realize Autism itself impairs people for the most part in ways that cannot be seen on the outside.

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This is because it is a neurological disorder. This means is you don't see how the environment around a person is affecting them- you just see their reaction. It may be hard to understand why someone is having such an extreme response. Over stimulation can happen with any of the five sense. Hearing certain pitches and tones may be painful, certain textures may feel sharp or feel uncomfortable.

Sometimes people forget that the spectrum also consists of hypo-senstive individuals.

These individuals are under responsive or slow to respond to certian stimuli. For example, Olive is pretty much indestructible. She's under responsive to pain and touch, and craves compression. She is a “sensory seeker”. She purposely bumps into things, and loves to push up against things- especially people. She has non stop energy. She never stops moving, climbs anything she can, and loves ‘going upside down’. When Olive doesn’t get the stimulation she craves is effects her ability to pay attention or get through a task. To help manage this we make sure she as a balanced sensory diet- a variety of actives to fill her sensory needs, time to decompress to avoid her becoming overwhelmed, and follow a regular routine. A combination of these things help her function to her highest potential.

While hypo-sensitive in some ways she also has sensitivities. She can't stand certain textures, and has sensitive hearing. This effects what she eats and the clothes she wears. She has trouble clearing her mouth after a meal, and swallowing certain textures of food. When younger she would store food in her mouth for HOURS, or chew up her food and spit it out on her plate EVERYDAY. She had a very limited diet because of this. Jeans are non existent, because they hurt. Olive loves being in the water but becomes overwhelmed when entering a car wet from the rain, or immediately panics when her shirt gets wet and instantly removes it, or get upset when getting out of the bath. She hates the feeling of moisture unless she’s full submerged in it. Because of Olive’s sensitive hearing she'll sometimes start yelling to compensate for loud noise she hears and hold her ears to block out the noise. This is usually from an unexpected noise or high pitch sound. AUTISM SO COMPLEX. Which brings me to this, please understand the annoyance in unsolicited advice.

There is a reason they say, "If you've met one person with Autism, then you've met one person with Autism.", no two people are a like and this goes double for people with Autism. 

It's so important for people to understand just how complex Autism is. This is the only way to begin inclusion, acceptance, and most of all understanding. Educating yourself will not only give you a better understanding, but also equip you with the knowledge to spot Autism early. If your child or someone you know exhibits two or more behaviors, look into it. Thinking someone is too smart to have Autism (yes, people really think this.), or makes eye contact, or seems social shouldn't be what dismisses your concerns.

Autism is part of a person, but it doesn't define them.

Someone can be verbal, seemingly normal, and out and about with no problem, and STILL have Autism. You will be amazed at what people one the spectrum can do, experience, and feel. People with Autism are smart, able, worthy individuals. All you have to do is open your eyes to see it. 

 
 

A Leap of Faith

 

School is out, summer here, and I officially have a first grader!

I remember this time last year, we were having to explain to Olive that she would not be going to the first grade. And while we knew she would benefit most from remaining in kindergarten, it didn’t soften the blow. Truthfully, Olive was significantly behind. This didn’t occur to me until it was placed right in front of my face, during our final I.E.P meeting of the year. I remember looking at her level of progress just to find it to be left blank. This was because her academics were so far below the curve, that her progress wasn’t measurable in comparison to the other students. The hardest part of it all, was she was completely aware of this. Olive would ask me why she couldn’t write her name or read. I was heartbroken.

I was determined that this year would be different- and it was. She benefited so much from repeating kindergarten. I think a lot of it had to do with the predictability of it all. She was more aware of the routine in front of her. She was able to focus more on academics and less on unexpected changes. Over the summer she precipitated in a program called ESY. This is different than summer school. The primary focus of ESY is for students to receive their services over the summer, as well as academic help. This was great for Olive. Especially because my main concern was regression. Over spring break and winter break we noticed a regression in her speech. We went from understanding what she was saying completely, to not even understanding 50% of her speech. In addition to that, it took WEEKS for her to get back to routine and for her speech to progress. The ESY was great for consistency, which is key in her function at her highest potential.

I was completely blown away by Olive’s progress this year. I’m talking zero meltdowns or behavioral issues. When I say ‘behavioral issues’ I’m referring to her response to an unexpected change. This can cause her to become overwhelmed, and withdrawn. This can last a few minutes to ultimately set the tone for the entire day. I am very proud to say she’s been “on level’ the entire year from start to finish.

Her speech has taken on tremendously, and her vocabulary seems endless. She can read and write not only her name, but can write sentences. Olive has mastered all of her sight words, and can read books with little or no assistance. But what I treasure most her found sense of confidence. She believes she can do anything- and so do I.

A week ago I received news that my biological father was in the hospital with a brain tumor.

For those of you who don’t know, my father was not in my life. At 30 years old, I had came to terms with the fact I may never ‘meet’ my dad. My whole life felt some what incomplete, not necessarily from the absence of him. More so the lack of family in general. The only people I grew up knowing were immediate family (mother, step dad, and siblings.). I didn’t grow up knowing cousins, aunts, uncles, or even grand parents. By the age of 17 my mother and I had become estranged. In every sense, ‘family’ was a foreign concept to me. Things that feel natural to most, are things I’ve had to work hard at for the best interest of my children. I’ve always struggled with accepting love, had problems with self worth, and things like depression and anxiety are frequent visitors of mine. Once I had children I had to learn to turn off survival mode in order to be genuinely present. So when I received the news, I immediately had to fight all urges to run, ignore my anxiety, and get on a plane. This is one of the hardest things I’ve ever had to do. I essentially was getting on a plane to meet strangers in hopes for some closure. I also had to come to terms with this may be the first and last time I see my father.

When I touched ground, I was greeted by family. Family I had no memory of meeting, but they seemed pleased I came. I still can’t really put into words what it was like seeing him. What I do know is initially it was hard to not cry, and it took me about 20 minutes before I could even really look at him. He was heavily medicated, confused, and seemingly unaware of my presence. It took everything in me to not have a panic attack. I had to take a break. My uncle asked if I wanted to grab dinner, I happily agreed. After refueling on food, drinks, and friendly conversation with some other family members, I found myself feeling strangely comfortable. After dinner, we went to go see my grand mother. I couldn’t believe my eyes, on the wall was a baby picture of me. It was nice to know I wasn’t forgotten, but still felt very bizarre.

The more time I spent, the more time I wish I could stay.

I visited my dad again that night, he was sleeping. I still had yet to touch him, or really say anything. I just stared in silence. After that, I was headed to see my childhood best friend , whom I had not seen since I was 10. She nicely offered me to a place to stay for the night I was in town. Upon seeing her, we immediately picked up where we left off. Even after 20 years, I felt so comfortable and genuinely happy to be there. We talked about everything and anything. It was like I never left. That morning, I went to see my dad one more time before I had to be at the airport. While there, we were visited by the neurologist who then informed us that there would be no biopsy.. the cancer had spread. He told us that chemo or radiation would not give him a better quality of life, and this point our new focus needs to be making him as comfortable as possible. For the first time since I arrived, I started to cry.

I couldn’t help but become upset once seeing his mother cry for her son, only wanting to take him home. His brother and girlfriend who had been by his side during the whole ordeal become visibly upset. It was a lot to take in. Shortly after hearing the news it was time for me to catch my flight. And for the first time I put my arm around him and said, “I am really happy I came, and I am so happy I got to see you.” I then held his hand for a second. Something I’ve avoided because I feared it would make it that much more real. And it did. I crumbled. My uncle asked if I wanted a picture. I politely declined. I don’t want to remember him this way. I walked out of the room and didn’t turn back. While the circumstances weren’t ideal, I was so happy and grateful for the chance to finally lay eyes on my father. My only regret it not making the effort sooner. I can honestly say I came to Maine initially feeling like I was amongst strangers, but I left feeling surrounded by family.

 

Why I Don't Support Autism Speaks

Autism Speaks is one of the largest and most well known, ASD non-profit organizations in North America. Every April they urge us to ‘light it up blue’, and to donate to help fund services for autism families. They continuously harp on their mission to promote acceptance and awareness of autism. Autism Speaks uses their large platform to help the autism community on a legislative level. They’ve recently introduced a bill to Congress that if passed, would improve and increase state funding and services for those with autism. Another way they contribute to the autism community is by funding autism related research. I recognize that Autism Speaks has contributed a lot to the autism community, and I am no way trying to demonize the organization or the people who support it. However, I think it’s important that people know the controversy surrounding Autism Speaks.

In the beginning I was very interested in what had looked to be, a trust worthy source of helpful information. At first glance, I noticed an overwhelmingly large number of autism parents in support of Autism Speaks. During Autism Awareness Month, places like grocery stores and coffee shops help collect donations in support of Autism Speaks. I initially didn’t hear much negative backlash about the organization. It wasn’t until a year or so that I had begun to look into other non-profit organizations, and began reaching out and connecting with people with autism.

That’s when I noticed that something really stuck out to me. With all the great people I’ve met, and have come know on this journey, I hadn’t come across any people with autism who supported Autism Speaks.

In fact many of them spoke of them in anger and disgust. I began to realize this wasn’t some sort of conspiracy theory, or some kind of misinterpreted information. The truth is Autism Speaks is doing more harm, than good.

  1. Only a Small Percent of Donated Money Goes to Family and Services

Autism Speaks raises around 50 million dollars a year in fundraising and donations. A majority of people who donate to Autism Speaks assume a good portion would go towards helping autism families and supporting people with autism. Unfortunately, that’s not the case. Last year less than 2% of funding had gone towards ensuring ASD families and people are receiving the help and services they need. Prior to that, it was only 4%. A majority of the budget is spent on research and fundraising. While research is important for us to better understand autism, their focus is on curing and eliminating autism. Majority of their research is geared towards the future of autism, instead of focusing on bettering the lives of those affected now. On top of the small percentage that actually goes towards providing services and support for those who need it, at least 13 individuals receive a salary between 200k-450k. Numbers like this are leaving people wondering how genuine their motives are.

Autism Speak’s Return of Organization Exempt From Income Tax (2016).
Autism Speak’s Return of Organization Exempt From Income Tax (2017).

2. Their Choice of Advertisment Hurts The Autism Community

Autism Speaks receives a lot of back lash on their choice of advertisement. In 2009 they produced and released a PSA video called ‘I Am Autism’. What made the video so controversial is what is being said. The video claims that, “Autism works faster than pediatric AIDs and cancer combined.” and states, it’ll “ruin your marriage and bankrupt you.” The video portrays people on the spectrum as a burden and fosters fear instead of acceptance. The video continues on to makes comments about how autism will “embarrass” you and make family outings impossible. I couldn’t believe what I was hearing. Here’s a transcript.

I am autism.
I’m visible in your children, but if I can help it, I am invisible to you until it’s too late.
I know where you live.
And guess what? I live there too.
I hover around all of you.
I know no color barrier, no religion, no morality, no currency.
I speak your language fluently.
And with every voice I take away, I acquire yet another language.
I work very quickly.
I work faster than pediatric aids, cancer, and diabetes combined
And if you’re happily married, I will make sure that your marriage fails.
Your money will fall into my hands, and I will bankrupt you for my own self-gain.
I don’t sleep, so I make sure you don’t either.
I will make it virtually impossible for your family to easily attend a temple, birthday party, or public park without a struggle, without embarrassment, without pain.
You have no cure for me.
Your scientists don’t have the resources, and I relish their desperation. Your neighbors are happier to pretend that I don’t exist—of course, until it’s their child.
I am autism. I have no interest in right or wrong. I derive great pleasure out of your loneliness.
I will fight to take away your hope. I will plot to rob you of your children and your dreams. I will make sure that every day you wake up you will cry, wondering who will take care of my child after I die?
And the truth is, I am still winning, and you are scared. And you should be.
I am autism. You ignored me. That was a mistake.
And to autism I say:
I am a father, a mother, a grandparent, a brother, a sister.
We will spend every waking hour trying to weaken you.
We don’t need sleep because we will not rest until you do.
Family can be much stronger than autism ever anticipated, and we will not be intimidated by you, nor will the love and strength of my community.
I am a parent riding toward you, and you can push me off this horse time and time again, but I will get up, climb back on, and ride on with the message.
Autism, you forget who we are. You forget who you are dealing with. You forget the spirit of mothers, and daughters, and fathers and sons.
We are Qatar. We are the United Kingdom. We are the United States. We are China. We are Argentina. We are Russia. We are the Eurpoean Union. We are the United Nations.
We are coming together in all climates. We call on all faiths. We search with technology and voodoo and prayer and herbs and genetic studies and a growing awareness you never anticipated.
We have had challenges, but we are the best when overcoming them. We speak the only language that matters: love for our children.
Our capacity to love is greater than your capacity to overwhelm.
Autism is naïve. You are alone. We are a community of warriors. We have a voice.
You think because some of our children cannot speak, we cannot hear them? That is autism’s weakness.
You think that because my child lives behind a wall, I am afraid to knock it down with my bare hands?
You have not properly been introduced to this community of parents and grandparents, of siblings and friends and schoolteachers and therapists and pediatricians and scientists.
Autism, if you are not scared, you should be.
When you came for my child, you forgot: you came for me.
Autism, are you listening? (ASAN 2009.)

2013 Suzanne Wright co-founder of Autism Speaks, released a written “call to action” on the “epidemic” known as autism. In this letter she compares things like, children having autism to a person being “gravely ill” or “missing”. She refers to autism as an “epidemic” and a says that it is a “monumental health crisis”. By this, she is only adding to the already damaged stigma of autism. Autism Speaks talks about autism as if it should be feared, and is using their large platform to promote negative stereotypes, and collect on people’s pity.

3. Autism Speaks Endorses The Judge Rotenberg Center

The Judge Rotenberg Center is a live-in facility in Massachusetts, for individuals with severe disabilities. The center is known for its no-rejection policy, and because it’s the only facility in the U.S. that still uses electroshock therapy. The JRC uses an electroshock device called the graduated electronic decelerator (GED). This device sends electroshocks to a person’s body, and operated by remote. They are made to wear these constantly, and can be subjected to shock at anytime. The purpose of the shock is to eliminate undesirable behaviors, in hopes a person will associate the behavior with the shock, and discontinue the behavior. This practice is called aversion therapy. Various people have spoken out about their treatment while at the JRC. Stories of being shocked for things like stimming, being too loud, refusing eye contact, and refusal to take off a coat. These shocks have lasting effects, well after the pain has subsided, including things like PTSD and burns to the skin.

The JRC has had numerous controversies in its history including several lawsuits, a viral video of the torture of a student, and 6 deaths.

Yet, a few years ago Autism Speaks listed the JRC as a viable service provider in its Walk Now For Autism Speaks event in D.C. I won’t go into much detail of the abuse that has gone on, and continues to go on at the JRC because it includes subjects like torture and ableism, which I know can be triggering for some. If you’re interested, there are several testimonies and you can find online in regards to the inhumane treatment of the JRC.

4. They Don’t Include People with Autism in Positions of Power

Until recently Autism Speaks excluded people with autism from its Board of Directors, and from any position that holds power. Long story short, they’ve been making decisions for what’s best for people with autism, without actually including people with autism. In 2013 Author John Elder Robinson resigned from roles with the organization Autism Speaks. Robinson volunteered and worked with the organizations Science and Treatment Board. Upon the release of I Am Autism, Robinson felt compelled to resign and cut ties with the organization. He released a public letter explaining how he felt the organization was doing more harm than good, due to the way they choose to portray autism. In 2015 Autism Speaks added two new members on its Board of Directors. While this may be a small step in the right direction, people still feel their views are ablest and are guilty or portraying autism in a negative way.

Autism Speaks is only one of many ASD non-profit organizations. There are so many other non-organizations that are worthy of your support and donations. I am fully aware that every charity and non-profit organization has its own unique goals and mission. It’s very clear that Autism Speaks is geared towards parents and caregivers of children with autism, research for prenatal testing and finding a ‘miracle cure’ for autism, and ‘spreading awareness’. Since all of this controversy, Autism Speaks has spoken out and said they are working on better serving those with autism. They added a new section to their website labeled “For the Record”. This is them explaining they have refocused their mission, in hopes of creating a more of an impact. They then go on to explain why they’ve chosen to remove the word “cure” from their mission statement. Also they restated their position on vaccines, and the use of aversion therapy. No one is perfect. And while they have made strides in the right direction, I still can’t in good conscious support them.. When you know better, you do better.

My purpose is not to demonize Autism Speaks and those who support them. I in no way think less of a person who supports Autism Speaks.

I just think it’s so important people know the facts, and that are other deserving and inclusive. All of this started because I was curious to why Autism Speaks isn’t generally accepted by the autism community, and took the time to ask. If you want to be an ally and support people who are autistic, be accepting and inclusive. Support charities and non profit organizations that includes the voices of people with autism, and are geared towards supporting people with autism. If anyone is interested in any autism friendly non profits I’ve listed a few below.

  1. Autistic Self Adocacy Network (ASAN)

  2. Autistic Women & Nonbinary Network (AWN)

  3. Self Advocates Becoming Empowered (SABE)

  4. Asperger/Autism Netowork (AANE)

  5. National Autistic Society (NAS) UK Based

  6. Autism National Committee (AutCom)

  7. Autism Network International (ANI)

  8. Organization for Autism Research (OAR)